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Did you miss National Cancer Survivors Day yesterday? Not to worry, so did I. I scored nary an invite to any of the festivities. I’m not even sure I am a cancer survivor; all I know is that my cancer hasn’t killed me yet.

Turns out I’ve got a good cancer, if there is such a thing, one that people can live with for many years. And since most of the time I’m in complete denial about my co-existing conditions (my impaired liver and my polycythemia–Happy 17th Polycythemaversary, by the way), I can pretend I too will be one of these people who will live a long life.

One of the main reasons I don’t feel like a true survivor is that I still take daily medications to keep my leukemia at bay. Oh, and my regular visits to the Cancer Centre. There’s nothing like hanging out amongst my cancerous peers to remind me I’ve still got the big C.

Unlike many other cancerous folk, I have very few leukemia cells now, according to most recent testing. So few that, in a CML patient booklet I just read, I am considered in remission. No one has used the R word with me before; in fact, when I was first diagnosed, I was told people with CML don’t go into remission. I was as surprised as you may be. If I’ve misled you, I did it unintentionally.

I also learned from that informative booklet that, with the advances in treatment of CML, many of us are living to a ripe old age. The focus of intervention has shifted from treatment to our quality of life. That part I get, now that I have reached Day 7 of The Wrath of the Gouty Finger. The leukemia isn’t so bad; it’s the symptoms and medication side effects that I find challenging.

So I’d like to suggest a new day of celebration more appropriate to those of us with CML. Let’s call it National Cancer-Symptoms Survivors Day. We’d be celebrating maintaining our quality of life while living with the threat of a potentially terminal illness hanging over our heads. We gatherers could compare notes on our various medication side effects and how we have survived them. We could share information about the interventions we’ve added on to manage those side effects.

I can think of many ways such a get together could benefit me. I’m sure there’s a CML survivor out there who would know how to manage yoga postures that require my lying on my belly. “Do you also have to rearrange the position of your football-sized spleen when you lie down?” I’d ask. Or how about our unrelenting fatigue? “Do you too fall asleep during matinees? How do you keep yourself from snoring?” Then there are the challenges of taking all those drugs. “How do you manage to time your medications to minimize all drug and food interactions?” The possibilities are endless!

We’ll plan our special day to coincide with the National Cancer Survivors Day. Then those of us who feel left out will have somewhere to go where we feel a sense of belonging. We all need to feel we belong somewhere.

We’ve had a bit of a hairy holiday, and when I say hairy, I mean hairy. We’ve been dog sitting left and right, three shedders followed by one non shedder. Jelly has enjoyed the company, although it appears that familiarity breeds boredom. As I write, Jelly and her bestie are sleeping soundly on their beds.

But time stops for no cancer patient, and so yesterday, when many workers and schoolchildren enjoyed a day off, I was visiting the only blood lab open in the vicinity. Then today, the first Tuesday of January, J. and I traipsed off to see Dr. Blood. The appointment was largely uneventful but even uneventful appointments are instructive.

Shall I review which blood tests were wonky and which were improved? I could but that would bore all of you. Also, the numbers are only a small piece of the puzzle. Lately Dr. Blood and her proteges have been stressing that how I feel is more telling than any lab test result.

But one wonky result is too intriguing to skip: yes, I have too much uric acid. I can’t tell you what uric acid is but I know that having too much of it, whether because of overproduction or underexcretion, can result in gout and kidney stones. Although gout used to visit me regularly, I have been surprisingly pain free for a very long time now. I have never had a kidney stone, although I hear they are not much fun.

Dr. Family suggested the uric acid testing when I showed her a few small painless bumps on my hands last month. I thought one bump might be a wart, but the ineffectiveness of the do-it-yourself wart remover told me otherwise. (A word from the experienced: Do not use wart remover to remove anything but a wart. That stuff burns like the devil.) Dr. Family reassured me I was not turning into a frog.

She diagnosed my bumps as tophi, not warts. Tophi are deposits of uric acid crystals that can develop over time if uric acid levels are elevated. My polycythemia and leukemia and other various medical anomalies may be to blame for my predicament.

Thankfully, Dr. Protege, or shall we call her Dr. Fellow, reviewed this finding with me and stressed that my high uric acid level is less important than how I am feeling. I told her I am feeling bumpy but goutless. She is not especially concerned, and made no mention of my morphing into an amphibian of any sort. Phew!

In the meantime, because the Great Sugar Revolution has so successfully lessened my fluid retention (in other words, it has deflated the water balloon that is my midsection), J. is encouraging me to ask Dr. Liver whether I can reduce my diuretics. These drugs deplete the body of fluid and can, in the process, elevate uric acid levels. If I lower my diuretic dosages, maybe that will slow down the development of those unseemly bumps. I may not be turning into a frog, but I still don’t want to look more and more like one.

You may have been glued to the television or internet on Tuesday, but I didn’t have the time or energy for that. I must say it took considerable effort to avoid watching the U.S. election results. I had to resort to Chopped on Food Network for distraction. While you were fretting about the election, my Tuesday was a typical day in the life of a cancer patient.

I visited the Cancer Centre with J., where I attended my regularly scheduled appointment. We arrived early to secure parking and I trotted off to the lab for an up-to-the-minute blood-analysis (ca-ching). While we awaited my appointment, the volunteer Cookie Ladies appeared with their warm tea and snacks (ca-ching for that endless supply of cookies and drinks). Sipping on tea is the perfect antidote to the stress of a cancer-related appointment.

A lovely hematology nurse called me in and assessed me (ca-ching). Then I saw a knowledgable hematology fellow (ca-ching, ca-ching), who consulted with with Dr. Blood (ca-ching ca-ching) and sent me off for another two months. My body and my blood are stable, except for an odd mouth infection I developed after a trip to the dentist last week. My magic mouthwash–yes, that’s what it’s really called–seems to be helping. Finally, I stopped by the in-house pharmacy to pick up two months’ worth of free chemotherapy (ca-ching ca-ching ca-ching, although there could be more ca-chings; those drugs are expensive).

Have I ever mentioned that Dr. Blood had to seek special dispensation for the government to fund one of my chemotherapies because it is not normally used for polycythemia? I’ve often wondered how I’d pay for that medication out of pocket or, even worse, whether I could afford it at all. Would my functioning decline were I not taking it? Thankfully, I needn’t worry about those things.

For my excellent and timely care on Tuesday, we paid solely for the cost of gas and parking. I’d pay an arm and a leg for parking in order to receive such fantastic medical care. (As an aside, I saw this picture in the news recently: in it, a hospital-parking-fee protester vandalizes the parking meter. Mr. Destructive, who do you think will be paying to fix that machine? Perhaps you might consider another means of protest.)

All this has me thinking of J.’s decision, at age 53, to retire in 13 work days (not that anyone’s counting). She could not have fathomed doing so if we lived in the U.S. Our health care costs would have been daunting, and early retirement would have been impossible.

While that new president was being elected, our grand niece was admitted to the children’s hospital in need of delicate spinal surgery to remove a growth. Imagine any family having to bear the cost of neurosurgery. Thank goodness these parents don’t have to worry about paying for treatment and can focus on more important things.

The results of the U.S. election remind me of how lucky I am to be sick in Canada. 20 million people in the U.S. have benefitted from Obamacare, and I can’t imagine their fear that their new government may alter or eliminate their health-care benefits. If need be, moving to Canada is always an option.

I love my work, but, to be honest, being a psychologist is not all butterflies and rainbows. I have had to deal with many challenging people and difficult and emotional situations, Abuse is traumatic for the client and its disclosure can be traumatic for the therapist too. My clients have survived tremendous adversity.

Often, I’ve been the bearer of bad news. Parents can be devastated to find out their child is learning disabled, or has an autism spectrum disorder, or may not become an astrophysicist. For years, I informed parents I believed their children, whom Children’s Services had removed from their care, should not be returned to them. I lost a lot of sleep questioning my own judgement.

Years of this type of work are wearying even for a competent clinician. I don’t often consider the positive side of having cancer, but I can thank my leukemia for potentially preventing occupational burnout. My work doesn’t compare to that of a physician, however. I may have said things that affected the rest of my client’s lives, but I’ve rarely dealt with life-and-death situations.

I can’t imagine informing a patient that she has cancer. That’s what that smart hematologist-on-call told me four years ago. (Happy Cancerversary to me, by the way!) The ER doctor called Dr. Diagnosis for a consultation because of my blood disorder (polycythemia). Dr. D. reviewed my past blood work, spotted some anomalies, and suggested further testing.

I can remember exactly when she told me she thought I had leukemia. After spending a long day in the ER, I was transferred to a hospital bed, so J. had just gone home. I was alone, overwhelmed, and overtired when Dr. D. came in to give me the news. Needless to say, I was beside myself. What did she know? Had she consulted my hematologist, whose care I’d been under for 12 years? Somehow she kept calm in the midst of my meltdown.

J. and I talked with this know-it-all together the following day. J. was as perplexed as I was. We challenged her and confronted her and she stayed calm. In the midst of our uproar, she told us that the diagnosis was a good thing, that she caught the illness early, and that there were wonder drugs that could stop CML in its tracks. That was the good news, and eventually we stopped fighting with her.

By the end of the week, J. and I had realized this doc had probably saved my life. Then, even though we had just met and I had caused her a full week of confrontational grief, Dr. D. facilitated my transfer from my old hematologist, whom I no longer trusted, to Wonder Woman, a.k.a., Dr. Blood.

So I don’t envy these doctors, and I couldn’t do their job. How do they describe their day over dinner? “Saved a patient’s life today, honey.” How do they manage when a patient they’ve cared for and cared about dies? Do they ever fret, or lose sleep, over their decisions? They must. If they need to maintain professional distance to survive the emotional onslaught, so be it.

Thanks docs. I wouldn’t be here today without that level of care, and caring.

Turns out my cancerversary will be long past by the time I see Dr. Blood and her fantastic team again. I have been given the summer off my patienting job so I can busy myself with other things, like deciding what to bake for my next celebratory Cancer Centre visit.

Barring counselling the odd client (by “odd” I mean “occasional” and not “unusual”), I will have a fair amount of free time this summer. Lukewarm coffee, anyone? I’m available days. As always, I will keep the home fires burning while J. is off earning our keep. Jelly and I will walk ’til we drop, I will keep us in groceries, and I will cook tempting meals and bake delectable wares.

Why just the other day I went to the mega-grocery store, list in hand, only to have an energy vampire sidle up to me at the red potato bin. This well-dressed older woman had nothing better to do than suck all the energy out of unsuspecting shoppers. You know the type, ready to pick a fight over the produce.

As I was choosing my red potatoes, the EV sidled over and said: “Those potatoes don’t look very red.” I nodded and smiled but did not engage her because I feared what might come next. (When anyone tries to engage me in a negative conversation, I put up my magic shield and deflect all incoming messages. Alternatively, say something nice or engaging or interesting and my shield magically vanishes.) Because she had not garnered the outrage she was hoping, she repeated herself: “Those potatoes aren’t very red.” Then she added: “They must be genetically modified.” That’s quite the judgement on those poor potatoes, isn’t it?

If I were an agronomist, perhaps I could have determined whether the potatoes were genetically modified. But, sadly, I’m an ignoramus. EV was implying through her tone of voice that genetically modified potatoes are evil. I don’t know enough about genetically modified food to care. I may nurture my gut bacteria with daily kefir, yet I wonder whether some genetic modifications are not so bad. If you can make my tomato last longer or pack a more nutritious punch, I’m in. That’s why I bought those pink potatoes despite EV’s protests. For all I know, they’re better for me.

After I laughed (just a bit), I said: “I certainly can’t tell by looking at them.” Then I left to check out the genetically ambiguous lettuce. Were I not wearing my ill-fitting socially appropriate hat that day, my inside voice would have said: “Why the heck are you shopping at the cheap mega-grocery if you have disdain for genetically modified produce? The farmer’s market beckons! There you will find God’s bounty. But don’t complain about the ugliness of the produce or the short shelf life.”

Perhaps my strong reaction stemmed from the fact that I too am genetically modified, albeit by God and not by science. Imagine my life without my genetic anomalies, i.e., my Philadelphia chromosome (a.k.a., CML) and my JAK-2 mutation (polycythemia). I’d kill for a scientist to manipulate my genes. Who knows? Maybe it could extend my shelf life.

You probably want to know how my appointment at the Cancer Centre went yesterday. I’ve been holding out on you long enough. Let’s not keep you waiting any longer.

We arrived early despite construction on the route to the hospital. That’s because we allowed one hour for our 15-minute journey. Remember J.’s motto: “If you aren’t early you’re late.” The appointment started and ended punctually, so we did not even reach the parking maximum. What’s the saying? 7 dollars saved is 7 dollars earned? That’s it.

What’s that? You wanted to know about the appointment itself?

The visit was lovely. The very kind nurse, whom we had not met before, beckoned us before J. had finished filling out my form. (As an aside, I forgot to confirm that J. had checked the “Itchiness” box, but I trust she did.) After we discussed how I’d been doing, the nice nurse asked me whether I’d been drinking. “Ha ha,” I responded.

Then we met with Dr. Blood, who had the most gorgeous shoes on. After discussing her footwear, she asked us all about our trip. Then we heard details about her upcoming vacation, which sounds fabulous.

Could I get to the point? But isn’t this the point?

Then, just like the nurse, Dr. Blood asked me whether I’d been drinking. Why was everyone asking about my alcohol consumption? Turns out my liver enzymes had inexplicably jumped since they were last tested. Elevated liver enzymes may indicate excessive happy hour participation.

My fair readers, you know I don’t drink. I never drink. Drinking is strongly contraindicated for those with a bum liver. So when Dr. Blood jokingly suggested I’d spent a little too much time in the pub, I chuckled again, whereupon J. raised her hand and said: “That would be me.” That gal of mine doesn’t miss a beat, does she?

Were you aware that over time women who live together end up cycling together? And by “cycling”, I don’t mean going for a bike ride, I mean visiting with Aunt Flo, having their time of the month, or menstruating, whichever terminology you prefer. This led me to wonder: since J. and I can no longer cycle together–I gave up cycling a while back now, poor balance and all–perhaps our bodies are finding other ways to commune. She drinks a few beers in the pub and my liver enzymes skyrocket, even though I’m sticking with pineapple juice and soda. It appears I am suffering the consequences of J.’s actions.

But there’s another reason Dr. Blood was asking about my boozing: I had told the nurse I was itchy. Intense, unrelenting itchiness can be a sign of a troubled liver, hence the “Itchiness” box on The Form. But I have itchiness à la polycythemia, i.e., my itchiness is short-lived and occurs only after a shower, as I explained to the doctor. “Oh,” Dr. Blood said, “that kind of itchiness.” And since everything else seems a-okay–if my liver were really in distress, I’d have no appetite, and there’s certainly no sign of that–Dr. Blood sent me for repeat blood work in a few weeks, and suggested a visit to Dr. Foie Gras if the numbers don’t improve.

As to my fear she might suggest lotion? Completely unfounded. She knows better than that.

You may have been skeptical when I spoke so glowingly about our recent trip. No vacation could be that good. Almost no rain in the UK for two whole weeks? Incredible sight seeing and church climbing? Great meals and fantastic lodging? Perfect health and Everready-Bunny energy? Surely, I must have been exaggerating.

I wasn’t. The trip was that good, except for one tiny health hiccup I haven’t shared. It was nothing major and in fact something I’ve experienced on and off for many years. Lest I forget that I am sick, I had two full weeks of this odd symptom on vacation. Every day following my shower, I was itchy. Short shower, long shower, cool shower, hot shower, it didn’t matter. Within a few minutes of drying myself off, the itching started.

“Why are you telling us this?” you ask. It may seem a strange thing to share, but it’s also one of polycythemia’s strangest symptoms. The itching feels like bugs crawling under my skin and lasts for about half an hour. It occurs most commonly after bathing, although overheating can bring it on as well, because of some defect in my body’s histamine reaction. Although I’m usually scratchy when I’m itchy, I refrain at these times because scratching makes it worse. And no, lotion doesn’t help.

I don’t write about my polycythemia much because I cope with it by pretending I don’t have it. Once leukemia took up residence, polycythemia moved to the basement suite. Polycythemia is a bone marrow disorder that is not considered cancer, and people can live with it for many years. Since it’s usually a disease of older people, the research on us young’uns is limited. As far as I know, I’ve made it past the median survival rate of 10 years post diagnosis but I haven’t yet attained outlier status.

Although there are many things that could potentially be the cause of my demise–leukemia, a failing liver, polycythemia, a wayward bus or a lightening strike–I can only consider one cause at a time. Remember, denial is my best defense, except when it isn’t.

Polycythemia is my dark horse. I take medication to manage my other medical issues, i.e., to keep my liver copacetic and my leukemia at bay, but I can’t do anything to slow the progression of my polycythemia. I am at the mercy of my polycythemia-specific JAK2 genetic mutation.

So we flew back to Calgary, the dry-as-a-desert city where everyone is itchy after bathing, and the bugs crawling under my skin took up residence elsewhere for a while, to my relief. But a few of them have returned, just to remind me that my polycythemia is still alive and well. So I slather myself with lotion after my shower since that’s what everyone in Calgary does and I sing happy songs and think of rainbows and puppy dogs (lots of puppy dogs), and I get on with my day.

Tomorrow I’ll mention my itchiness to Dr. Blood. (That’s after J. checks the “Itchiness” box on the Cancer Centre form.) Dr. Blood will tell me to use lotion and I’ll nod and pretend I’m not scared. And this too shall pass.

Sorry for the short absence there, folks. J. and I were lucky enough to be granted our first glamping experience. Generous friends, good food, beautiful surroundings, no internet access, and an RV roof over our heads. Who could pass that up?

But I’m back now, and ready to share more failures and inadequacies with all of you. How else can I keep this blog engaging?

People often use imagery to help them through cancer treatment and recovery, envisioning the radiation blasting the bad cells into oblivion, never to return. Me? Not so much. I am an abject failure at using visual imagery to manage my stress. I guess that’s not really true: I can visualize, but not in a way that helps me to cope. Some psychologist, huh?

I had a perfect opportunity to use imagery during that little health hiccup a few months back. During this episode, I experienced bone pain for the first time. Of course I did not look up possible sources of bone pain on the internet; I made J. do it. And she found that there are many possible explanations, including infection (the most likely cause in my case) and, of course, cancer. According to the internet, every symptom under the sun can be a sign of cancer, remember?

Around this time, Dr. Blood had been talking to me about my no-longer-dormant polycythemia, and the possibility that, if the disease progressed, I might develop fibrosis, or scar tissue, in my bone marrow. The tissue would take up the space where new blood cells are produced. Ultimately, my marrow would have a heck of a time keeping up with my blood cell production because there just wouldn’t be enough room in there to do the job. I’ll leave it to you to figure out how this story ends, but let’s say that it’s not happily ever after.

Imagine my hearing this news while I was dealing with this unfamiliar symptom. What kind of visual imagery do you think I came up with? Of course, I envisioned an army of minions building permanent residences in my marrow. Were I an effective visualizer, I’d see minions obliterating any structures that the bad pac men were trying to erect.

Fibrosis in the anxious mind’s eye.

When Dr. Blood reviewed my recently discovered genetic anomalies with me last week, she dug the knife a little deeper: she noted that my constellation of mutations is associated with fibrosis. So of course I had to share with her my laughably ineffective visualization. Without skipping a beat, she responded: “You probably had them putting up scaffolding, didn’t you?” Wow, that’s a great image!

Now, some may consider Dr. Blood’s statement unempathic, but not me. I was thrilled. She wasn’t trying to make me more anxious; she was acknowledging my anxiety in her own empathic way. And in her way, she was giving me permission to be anxious about this potential progression. Or at least that’s how I chose to interpret what she was doing.

Funny enough, I’ve been feeling less anxious about the fibrosis since we talked, partly because the bone pain has subsided. Maybe it also helped to laugh with Dr. Blood at the craziness of my imagery. But even before our exchange, I knew, deep down, that those adorable minions would never want to hurt me.

J. and I have been talking about our annual September vacation. I happened to forget the conversation where I agreed we’d only go away for one week rather than two. Oh, and the decision that we wouldn’t go very far. I’m going to have to negotiate those decisions a bit more, since I aspire to an adventure in foreign lands if I continue to do well. Maybe I could borrow your travel insurance. Is that considered insurance fraud?

We may be staying put for the rest of the summer, but my blood went on a trip without telling me. I found out during my visit with Dr. Blood yesterday that a sample of my blood had flown to Vancouver so some learned geneticist could take a peek. This is what I learned: I have not just two but four genetic mutations. Any more and I will become an adult mutant ninja turtle.

I guess it’s not uncommon for some of these mutations to hang out together. And my particular constellation of genetic anomalies is associated with the slow-progressing polycythemia that I seem to have. Then the doctor admitted that this blood analysis was “an academic exercise” and didn’t add any new insights to her arsenal.

Enough about the travelling blood; we moved on to my new chemo. My kidneys and liver aren’t rebelling against this medication, and even my red blood count is holding up. But my platelets are dipping to dangerous levels again, which might explain the very prominent and growing bruises I have, one on each arm. An excitable dog caused one but the other is of unknown origin. I must have run into something in my leukemic stupor. Hopefully my fly was done up that day.

Dr. Blood gave me the rest of the summer off, except for a blood check in three weeks to make sure my platelets don’t sink any lower. Time to pray for proliferating platelets, folks. If the sticky cells decline any further, I’ll have to cease and desist this new chemo. That would be sad. As it is, I’m on a lower-than-therapeutic dose, so its effects may be negligible.

Did you know that, when your liver isn’t functioning all that well, drugs become more potent? That means I need a lower dose of a drug to obtain the same effect as someone with a healthy liver. So I’ve decided this lower dose may be enough for me. I happen to be on a lower-than-average dose of my other (leukemia) chemo and it’s working just fine.

How will I know if the new chemo is working? Take out your magnifying glass because my spleen may shrink. With this shrinkage may come increased energy and improved well being. (I’m choosing to ignore the potential side effect of weight gain, so you can too. Thanks.) Improved well being would be great, don’t you think? Less whining from me, more writing about topics other than my health, fewer visits from Sadness and Fear.

Hopefully I’ll find something to write about or I’ll be back to soliciting stories from you. I guess I could always take a blogcation, but what fun is that?

I really misjudged Friday’s post. I was intending to emphasize good news but hadn’t considered all the death talk you’d have to weed through to get there. If I unsettled you, I am truly sorry. I am fine, readers, I promise, and I did not intend to worry you. Maybe this post will help convince you.

At my Cancer Centre visit last week, I anticipated positive feedback because I’d been feeling so much better lately. More energetic, no medical crises, a-okay. Sure, I still seem to be walking around with my fly undone most days–please alert me if you notice–but these lapses are minor.

I still have leukemia and polycythemia; my genetic mutations have not reverted back to normal. I know the doctor will never be able to tell me that. Blood disorders aside, I’ve somehow developed more platelets and more red blood cells in recent weeks. I needed these counts to rise before Dr. Blood would consider that new chemo I mentioned a while back. Remember the pill I didn’t want to take if I could have a second round of radiation, but then wanted to take once more radiation was kiboshed? I’m terribly fickle.

This chemo, an addition to my current drug arsenal, won’t cure anything but may keep my polycythemia-related symptoms at bay. My still-quite-large spleen may even shrink. The doctor is hopeful that I may start to feel better. More energetic? Less sick? Better able to remember to do up my fly? Whatever “better” means, I’ll take it.

But there are potential side effects. When I start a new chemo, a Cancer Centre pharmacist sits down with me to outline those potential negative effects. I learned that this pill may depress my red and white blood cells and my platelets so I may again: a) become anemic; b) develop an increased risk of infection; and c) bleed out and die. As kind as these pharmacists are, they leave me feeling like I’m taking my life in my hands by ingesting their miracle drug.

Big deal. My other chemo threatens all those things and I’m still here, almost 3 years later. I can do this! Heck, I may even feel better if I don’t a) become anemic; b) get an infection; c) bleed out. But the doctor will stop those bad things from happening by monitoring me closely over the next while. Yes, I’ll be hanging out at the lab a bit more, but only for short visits since I’ll be sure to make an appointment.

But first, I asked the doctor for a short reprieve. J. and I were hoping to book another getaway this weekend, the only summer weekend Marriage Commisioner J. isn’t uniting anyone. (J. has found the best gig ever, by the way. She barely needed a shingle for people to beg for her services.) So that’s the fantastic news. We’re going away, thanks to Triple D.’s partner R., who will graciously dog sit while her special friend helps other clients. (Now do you understand why I haven’t given you 3D’s number?) And I get another few weeks for my blood counts to rise before their upcoming onslaught. Then we’ll see what happens. I’m hopeful and even excited.

So please don’t worry about me. Everything is great here. And you know I’m a terrible liar.